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HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DOCS)

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Tim Stewart Find out more about Tim Stewart
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  • Bert
    replied
    Re: HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DO

    Diane,

    I'm glad that you found these articles helpful for your overall awareness of HCM. As far as physicals are concerned, even if you standardized the physical exams so that you are trying to detect athletes who are at risk of sudden death, the incidence of SCD is so low it could never be made a public health priority worthy of an effort. The effort, as some physicians have mentioned, would be like "trying to find a needle in a haystack. From 1985 to 1995, 158 cases of SCD during competitive exercise had been documented in the U.S.

    Depending on how you define the denominator, the incidence of SCD in athletes is somewhere around one in 150,000 to one in several million participants (we have over 4 million high school athletes today). Only four sports (football, basketball, track and soccer) have been associated with more than five sudden deaths, yet more athletes and younger children are being included in screening. This makes the examination more inclusive, thereby making the effort less effective.

    What can the sports physical exam detect? The Mayo Clinic reported that significant cardiac abnormalities were found in 0.39% of 2,739 athletes who were screened. If we assume that the Mayo Clinic screening procedure is reproducible nationwide, then we are accepting that one in 500 kids will be disqualified from competing in order to find an illness with an incidence of one in 100,000. In other words, we will be disqualifying thousands of kids who will never have a problem.

    Even if we accept that they could find an anomaly in one of 500 kids, they have no way of knowing that these kids will have a problem. On the other hand, it is possible the athlete who will experience SCD will have slipped through the screening process. When a disease incidence, like HCM, is very low (usually less than 5%), a positive test result is more likely to be a false positive than a true positive.

    Nevertheless, I do agree with you about physical exams, as I believe that it is a medical event that is not inspired on medical need. If there is no scientific way of preventing athletes from getting injured or dying, then should we contend that an athlete can never be "cleared" to play? Probably explains why there is no justification for performing physicals to prevent sudden death.

    Just offering a different perspective. Feel free to agree or disagree as none of it will be taken personally. Just informing that's all...

    Best to all, especially the "little ones" who have not experienced all of what life has to bring.

    Bert

    Leave a comment:


  • Diane Tipton
    replied
    Re: HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DO

    I have to say I was very moved by the articles. I am thankful that we found out about our son's HCM before a disaster happened. However, he played football in 103 degree heat many, many times in 7th grade. We made the decision for him not to participate in 8th grade about a month before he was diagnosed. It was not based on any information, just a "gut" feeling that he should not play that year.

    I did not know HCM existed, or even how to find out if my son was at risk. He had an atheletic physical which showed NOTHING wrong.

    I think if articles such as this convince parents to have an Echo before the child is allowed to play organized sports, it is worth it. HCM is uncommon, but every year we hear of 3-5 school atheletes that die due to this condition. When it is preventable, one is too many. If there were no news reporting when this happens, parents would stay ignorant, as we were.

    Leave a comment:


  • Lisa Salberg
    replied
    Re: HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DO

    Bert,
    You are welcome... the HCMA is happy to provide this valuable service to all who visit this site.

    Lisa

    Leave a comment:


  • Bert
    replied
    Re: HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DO

    Dear Sharon,

    Thank you for sharing your point of view, and the recent accomplishments of the Anthony Bates Foundation. Whenever an organization is dedicated to providing people with invaluable information, it is a benefit for an extremely grand cause. There is no arguing that point.

    As far as statistics are concerned, they are not mine. They are for public consumption and meant to educate people as well as offer a different point of view, nothing more nothing less. When our family was first exposed to HCM, we were hit with information we were not ready to decipher. It could have been the timing of it all and the sequence of events, but I have no one to blame for myself for seeking advice, and putting my son through a rollercoaster of diagnostic tests. Since then, I've discovered that there is a great deal more to it than that, and I've begun to question things; statistics, diagnostic tests, medical practices for example. Unfortunately, it is perceived as a form of disrespect, or an attempt at "picking fights". If that's the case, I'm afraid that we will never have that wonderful place where we can all learn and grow.

    In any event, I'm happy to report, that I spend a great deal of time raising money, and promoting awareness with regards to implementation and usage of AED's in our own community (not just athletic events). Through the help of the athletic training program at our local college and our local hospital, we've been able bring qualified personnel to our area to educate people about the life saving benifits of AED's. As you can see, we're all working towards the same goal of saving lives, but in different way.

    I commend you for all you efforts and on a personal note, thank you for supporting the free-flow of information, ideas, thoughts, and last but not least feelings.

    Respectfully yours,

    Bert

    Leave a comment:


  • mtlieb
    replied
    Re: HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DO

    On Tim's articles...

    I don't think the articles are meant to scare anyone, or in any way over-dramatize the risks associated with HCM. It is information, period... and what you do with it is your own deal. Yes, some people might use that information to further an agenda of caution and fear... while others might say 'stop posting those articles, i only want to hear the good news about HCM so i can send my kid out onto the football field with a clear conscience'. Most of us read the articles and realize that the deaths might have been prevented with more awareness of the disease... so for some it becomes a call to action. And for a lot of us, reading the articles simply makes us appreciate how lucky we are to have been properly diagnosed and treated, where others were not so fortunate. It's okay to feel good about that.

    The bottom line is: read the articles... don't read the articles... frankly i don't give a crap, but at least make them available to those of us who are able to read them and still maintain a fair balance of information in our heads.

    Jim

    Leave a comment:


  • Lisa Salberg
    replied
    Re: HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DO

    Discussion is fine. I have received several calls to the office and PM’s and emails with concerns about your postings. It has appeared to these people that you are attempting to “pick fights”. I have maintained my position that I do believe in open dialog and will try my hardest not to “censor” comments on the board. You have mentioned in a few postings that you think you will be “kicked off” the board. I will offer the following statement to the public on that – It is up to you if you “get kicked off” or not…If you choose to make comments that make people upset than, yes you will be taken off the board and we have every right to do so. I would rather see you continue on the board and keep in mind that yours is only one point of view and your word have the power to hurt others. In my phone conversations with you I have seen a different “Bert” than I see here on the board. Some find the keyboard to be an easy way of venting, that is part of the world of the ‘Internet” – This however is not some massive message board…it is more it is a community of people with a special link to each other.
    Bert, you do not have HCM, it has touched your family via your son and we are here to support you. I am happy that your son is currently not having any symptoms related to his HCM. If the day comes that symptoms do show themselves I think those statistics of yours may have far different meaning. HCM is a hidden disability – Yes people die from HCM and some live with HCM and many LIVE as long as they can WITH HCM and someday are lost to its complications…that is reality, that is what we all live with every day.
    In your next postings I hope you will be respectful of others and understand that we are here as a community of support, education and advocacy.

    Best to all,
    Lisa Salberg

    Leave a comment:


  • SharonBates
    replied
    Re: HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DO

    Hello Everyone,
    I am not going to reply to everyone’s post. Everyone made good points (even you Bert). Isn’t that what the message board was designed to do...allow us to share information, ideas, thoughts and feelings! Thank you to everyone at HCMA for your vision, time, efforts and encouragement. This is a wonderful place to learn and grow. Each article that is posted is more information I would not have been able to find on my own...Thank you! I hope that this “discussion” doesn’t leave a bad taste in anyone’s mouth and that everyone feels free to share their opinion.

    As most of you know I formed the Anthony Bates Foundation last year. Oh, did I mention that we promote the occasional heart screening event. In the past two years, 5 events in Kansas and Arizona with our 6th event underway for October 26th in Manhattan, KS. Screening as we know it is not perfect...put it serves a bigger purpose. We have had the opportunity to do over 1,000 FREE echocardiogram screenings for young people. At no time has our organization, myself or any one of its representatives manipulated perceptions to profit from others anxiety, peddle fear or exaggerate the prevalence of HCM.

    Our purpose is to educate, educate, educate. We have reached tens of thousands of people through our efforts. We have had the opportunity to be involved in numerous radio interviews, TV interviews, newspaper and magazine articles written, published and circulated to thousands, pass out thousands of flyers about our events, a web-site that touches many more, sent out thousands of letters and Anthony Bates Foundation pamphlets and HCMA brochures to the medical community in the areas regarding our efforts. If you have never put together a heart screening event, you might not be aware of all the time, effort and PR work that is involved in making such an event come together. The bottom line purpose - to educate.

    Soon our promotional video will be ready. Yes, it talks about sudden death in athletes...Anthony was one of those athletes that died from an undiagnosed heart condition called HCM. He didn’t have a choice, but others will because he lived and died. So we are entitled to honor his memory with our efforts to save lives. Wouldn’t that be cool if our efforts saved the next inventor of teeny tiny machine that would save lives through a simple jolt of electricity to a diseased heart – or something even better?

    Each event allows us to talk to young people, their families, and communities about the symptoms of HCM. As well as getting young people to question their body's warning signs, and parents to question their family history ties to a sudden death that may be suspect. Heart screenings widen the safety net that parents build around their children. I know many parents that are grateful for this added check on the balance sheet called a Young Life.

    That is what I give to these parents and young people, information to make choices.

    Blessings to all,
    Sharon Bates

    www.AnthonyBates.org

    Leave a comment:


  • Bert
    replied
    Re: HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DO

    Lisa,

    My "comments" as you mentioned were nothing more than a renumaration of published and actual statistical facts. I don't recall making light of the fact that some of us have lost loved ones to HCM. I regret to inform you, that I too have lost loved ones, but to other diseases such as cancer, and to tragedies such as car accidents. Unfortunately, I have gotten to know the pain you are referring to in more ways than one, and as many others do, still live with it every day.

    In addition, I never argued that my point of view should be the eyes of the world. All I've done, is expressing my skepticism about what is being reported and how, as well as simply offer another perspective about risks and the prevalence of a disease. What people do with that information is up to them. I do not, have not, and will not tell anyone how to live their lives. Again, I'm just sharing information like anyone else, for people to make a choice with.

    I know I've become a thorn on the side of many HCMA members, and will probably eventually be banned for speaking my mind. If that's the case, I certainly can live with it. But, I think that not being challenged or questioned is unhealthy in the quest for a better understanding about HCM and the people it does afflict.

    Meanwhile, the goal is unquestionably to live life to it's fullest. and that can be manifested in many different ways. And yes, to keep the memory of those lost, wether it's at war, as a result of car accidents or HCM is a duty that the rest of us left behind need to honor and not make light of.

    Take care folks, and be well.

    Bert

    Leave a comment:


  • Lisa Salberg
    replied
    Re: HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DO

    I have read this posting from top to bottom... I have laughed and cried... I have been touched and confused....
    So here is my 2 cents...

    Tim - I thank you for all you do and I know many others do to. You have access to these wonderful newsclippings that allow us to see what is being printed around the world about HCM. We are all here because we share the bond of HCM and EVERY article is important. Tim, it appears to me that your motives for posting have been questioned. I for one am happy to read about everything you post, even if that is the death of a child. Happy - why would I be happy...not because a child has died God NO! Happy because that child can teach others - Happy because a family has turned a hellish experience into education. Yes, I cry when I read these stories... but that is OK the tears give me strength to keep going in the battle to educate and support those with HCM.

    Bert - Your comments are a bit harsh for those of us who have lived through the death of a loved one from HCM - or in my case 4 loved ones. I pray you never know the pain, and pray that you will see the world is more than your point of view. Stats are fine - and they teach us... they teach us what defines risk of SD in HCM - the HCMA shares information about those risks. What you choose to do with that information is up to you, we do not, have not and will not tell anyone how to live there lives...we provide information to make a choice with.

    Bill - thanks for the laugh - I needed that.

    To the families of those lost - thank you for sharing your children with us in this story - we know they were loved and we hold their memories in our hearts.

    To the rest of the posters and readers - Let us all remember that the goal is to live life - and keep the memory of those lost with us as we live each day to the best of our abilities.

    Peace to all,
    Lisa

    Leave a comment:


  • Bert
    replied
    Re: HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DO

    Reenie,

    The fact that you yourself make that decision based on the evidence that you have, is exactly what it should be. As long as it isn't a group or an organization that decides for you for fear of litigation, is what I oblige.

    Thanks,

    Bert

    Leave a comment:


  • Reenie
    replied
    Re: HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DO

    One point I think we all need to remember is that almost everybody knows that teens die in car accidents. Most parents will do their best to assure that their kids are safe. They drill on seat belt usage, speed control, awareness of surroundings, etc. The problem with many cardiac deaths of young people, and particularly young athletes, is that they are not aware that there may potentially be a problem with their hearts. In my opinion, if they knew they were predisposed to having heart trouble, of any sort, they would be more careful and not be running wind sprints before a basketball game. They would give the basketball up if they thought it would kill them. Sometimes that's the only way to protect our children from getting hurt.

    My personal experience is that although my kids have not yet tested positive for HCM I won't allow them to participate in competitive sports like soccer until I see that their echos are still as clear as they were last year. That's part of the way I do my best to be the best parent I can be.

    Leave a comment:


  • Bert
    replied
    Re: HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DO

    Dear Bill,

    Inevitably the unexpected collapse of young people during organized sports activities strikes to the core of our personal sensibilities. However, the infrequent occurence of deaths on the athletic field suggets that the intense and persistent public interest in these rare but particularly devastating events may be disproportionate to their overall significance in the general population. Indeed, these deaths occur much less commonly in the first 3 decades of life than other public problems, such as accidents, homicides, and even the consequences of illicit drug use.

    The fact remains that 7.47/1,000,000 high school and college male athletes die every year, that's 0.0000074% if you rather see it that way, and 1.33/1,000,000 high school and college female athletes die every year for a percentage of 0.0000013%.

    As some of us have pointed out 1 death is too many, and I'm not denying that, but it is still considered a fraction of those who die in cars at the high school level. Arguably, the news media can be accused of disproportionate coverage on a lot of other ills that afflict us, but in this instance I don't believe it's the case. Let's face it they're all real, but some deserve more attention than others wether we like it or not.

    Just my opinion.

    Leave a comment:


  • Bill
    replied
    Re: HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DO

    Why, why, why are the newspapers and TV news shows cluttered with stories about U.S. troops who die in Iraq? Why must we be peddlers of fear, and exaggerate the prevelance of danger in a war zone?

    There are 140,000 U.S. troops in Iraq and there have only been 138 U.S. deaths there. That's just .00098%! Clearly, combat-related sudden death is a VERY small problem. Therefore, participation in combat is a positive experience for many adolescents, and should be encouraged as the known benefits of military service are significant.

    And another thing: Why, why, why must we constantly read those dreary stories about people dying on the highways? Why the need to compound our worries beyond all reason?

    There are 191,000,000 licensed drivers in the U.S. , and last year there were only 42,196 deaths on American highways. Why, that's only .00022%! Clearly, death on the highway is a VERY small problem -- even less of a problem than death in a combat area, which we've already illustrated is an EXTREMELY safe place to be.

    Don't you think that when blown out of proportion these stories can do more harm? Disproportionate coverage of combat and highway deaths comes accross as a way to tap into our insecurities and fears.

    I, for one, refuse to bow to these media fear merchants. Let's demand some GOOD combat and auto accident stories for a change!

    Bill

    Leave a comment:


  • Bert
    replied
    Re: HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DO

    First of all, let me make this clear. The death of any young person should never be in vain, regardless of the cause. My point here is, that in this country, we are burdened by people and organizations that manipulate our perceptions and at times profit from our anxiety.

    While screening kids has the potential to save lives through early diagnosis, it's unfortunately not a fool-proof process. Screening can reduce the risk of developing complications but it cannot offer a guarantee of protection. In addition, in any screening, there is an irreducible minimum of false positives results and false negative results. If there is a likelyhood of too many false positives, it would be irresponsible to introduce a screening as too many people would be subjected to medical procedures they did not need. It remains unproven that refraining from strenous exercise decreases risk, it may precipitate death rather than cause it. Most of the these kids would be destined to live a normal life-span, remaining asymptomatic much later in life. Case in point, Italy has a national screening program for all athletes who must become "certified" to participate at a certain level, and yet they have a higher rate of SCD among athletes than in the U.S.

    I know were not much on statistics, although ironically most of medical practices are predicated on empirical data. Nevertheless, of the 40,000 annual deaths of 10-24 year-olds, 37% are car accidents, and yet we don't think twice about putting our kids behind the wheel as quickly as we can. With a kid who is just starting to take "Driver's Ed", believe me I'm more concerned about those odds than anything else at this point.

    The death of young people, sick or healthy, is a tragic event which ever way we look at it. I've spent enough time in children's hospitals during my athletic career doing fundraisers and charity work, only to discover that more doctors, more hospitals, and more tests doesn't corrolate with a healthier population. Incidently, the suicide rate for 15-19 year-olds has gone up 35% in the last decade. My question is, what are they afraid of living for? Does the culture of fear in our society have anything to do with it? Perhaps...

    Just a thought, that's all.

    Bert

    Leave a comment:


  • Glen Beamish
    replied
    Re: HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DO

    As sad as the outcome was, these were incredibly well written moving articles.
    Personally I feel there is a need to know even if this type of death is a small percent death re HCM.
    If you know what the content of the article is and feel it does you no good, don't click on it.
    Bert, that was not a comment aimed just at you, it was meant as a general comment for anyone that is not comfortable reading those type of articles, but I believe we should have the option to do so.
    Tim, Thank You.

    Leave a comment:

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